Problems with heart and lung muscles also mean that few with the condition live to see 30.

Kirath’s family, from Westwood Heath, have joined forces with other families to campaign to end delays to a breakthrough treatment called Translarna.

The drug - also known as Ataluren - is the first ever to tackle the causes of DMD and was approved in Europe in August last year and is available in France, Spain, Germany, Italy and Denmark, but not in the UK.

Kirath and other boys with the condition even wrote personal letters to Prime Minister David Cameron earlier this year in a bid to get the drug that could save their lives.

Kirath’s mum Jaspal, 39, said: “We are devastated at having to face yet more disappointment after another hurdle has been put in our way.

“All these organisations and NHS bodies that have been involved in the decision do not seem to be appreciative that this is a rare disease and very progressive one as well.

“Every day and week that ticks by for these children, their muscles are weakening and wasting away.

And that - the urgency - seems to get lost on these organisations. They aren’t concerned that time is ticking for these boys.

“You feel like you get filled up with hope and the bureaucracy and procedures that have to be followed get in the way.

“It was at NICE’s discretion to give a positive decision and it was in their remit to do that. But they decided to go for a different approach and want to bring the companies involved back to the table.”

NICE is now expected to meet with the manufacturers involved on November 17.

Robert Meadowcroft, chief executive of Muscular Dystrophy UK, which has backed the families’ campaign for the drug, said that the latest decision was “extremely disappointing” and it “really is a race against time” for many of the families.

Prof Carole Longson, NICE health technology evaluation centre director, said: “We are disappointed not to be able to recommend Ataluren in this draft guidance.

“DMD is one of the most common and severe forms of muscular dystrophy. It reduces life expectancy and causes debilitating symptoms that severely affect the quality of life of people with the condition, and their families and carers.

“The committee heard from the patient experts that one of the most important aspects of managing DMD is maintaining their child’s ability to walk because this means they can continue to go to school independently and participate more fully in social and sporting activities with family and friends.

“There is, therefore, a clear need for a treatment that can prolong a child’s ability to walk but without serious side-effects.

“After considering the evidence, and the opinions of the clinical and patient experts, the Committee agreed that Ataluren represents an important development in the treatment of DMD and could potentially prolong the time before children have to use a wheelchair, compared with best supportive care.

“However, the committee was not convinced that the proposed cost of Ataluren was justified by the evidence presented on the additional health benefits associated with Ataluren over standard therapy.

“Therefore, on the basis of the current evidence, the Committee was minded not to recommend Ataluren for treating nonsense mutation DMD.”